Measurements for Improved Quality in Healthcare

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Measurements for Improved Quality in Healthcare

This country report on Scotland is focused on systematic healthcare improvements based on measurements within the healthcare system, including clinical outcomes indicators and disease registries. It is part of the Swedish Agency for Growth Policy Analysis’ Health Measurement Project in which quality measurements in healthcare have been studied in a number of

Scotland

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Reg. no. 2013/012

Swedish Agency for Growth Policy Analysis Studentplan 3, SE-831 40 Östersund, Sweden Telephone: +46 (0)10 447 44 00

Fax: +46 (0)10 447 44 01 E-mail: info@growthanalysis.se www.growthanalysis.se

For further information, please contact Martin Wikström Telephone: 010 447 44 73

E-mail: martin.wikstrom@tillvaxtanalys.se

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Foreword

This country report is focused on systematic healthcare improvements based on measurements within the healthcare system, including clinical outcome indicators and disease registries in Scotland. It is part of Growth Analysis’ Health Measurement project in which quality measurements in healthcare have been studied in a number of countries. The Swe- dish Ministry of Health and Social Affairs commissioned the project.

The report was written by Johanna Lundberg (Sweco) and Pernilla Regårdh (Sweco) in collaboration with Martin Wikström (Swedish Agency for Growth Policy Analysis).

Stockholm, April 2013

Enrico Deiaco, Director and Head of Division, Innovation and Global Meeting Places

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Summary

The two main actors in the Scottish healthcare system are the Scottish Government and NHS Scotland (National Health Service for Scotland). Budget, policies and strategic initiatives are set by the government, while the NHS is responsible for the delivery of care to the population in its region, and held accountable to the Scottish Parliament. Many healthcare functions are delegated from the government to the 14 territorial NHS Boards, which are responsible for planning and delivering all health services to the population in their areas.

The Healthcare Quality Strategy for NHS Scotland, enacted by the Scottish Government in 2010, provides the overarching context for prioritization of policy development and quality improvement efforts within the NHS. The strategy encourages whole system improvement through mutually beneficial partnerships between clinical teams, the people in their care, and other national organizations involved in healthcare delivery. At its core are three quality ambitions:

•

Person-centered – mutually beneficial partnerships between patients, their families and those delivering health services, which respect individual needs and values and which demonstrate compassion, continuity, clear communication and shared decision- making.

•

Safe – there will be no avoidable injury or harm to people from health care they receive, and an appropriate, clean and safe environment will be provided for the delivery of health care services at all times.

•

Effective – the most appropriate treatments, interventions, support and services will be provided at the right time to everyone who will benefit, and wasteful or harmful variation will be eradicated.

Within the NHS, the Information Services Division (ISD), Healthcare Improvement Scot- land (HIS) and the Scottish Intercollegiate Guidelines Network (SIGN) drive the national quality improvement work. The ISD and HIS in particular have increased their roles in quality improvement in recent years and also work closely together on measurement, data collection, and analysis.

As for data and measurement, information for tracking and improving healthcare quality is collected across the entire Scottish healthcare system and spread out across several actors.

Historically, data collection and registry maintenance has been decentralized and driven by hospitals and clinical networks. Since a couple of years back, however, the ISD has taken over responsibility for running most national registries and audits. The national strategy is to try and link existing records together with added finesse, rather than start new registries.

A general note is to not confuse national quality measurements and quality registries. Dis- ease-specific quality registries are few in Scotland, while national measurements of quality are made systematically to improve healthcare.

Four overarching measurement systems are used to track and improve healthcare quality in Scotland today: audits, to evaluate the performance of the 14 NHS health boards; national audits for measuring and improving the quality of healthcare for selected diseases or conditions; specific quality improvement programs, typically coordinated by the HIS, that can drive improvements around a specific topic, and finally the three national disease registries

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in Scotland. From a public health perspective, these registries are mainly used on a population level to spot patterns and variations, hence leading to initiatives for changes for improving care.

Participation in register work is generally accepted within the Scottish healthcare sector.

There is no reimbursement for reporting data to the registers or central institutions and no financial penalties if data are not reported. In contrast to the hospitals, GPs have a much more developed financial incentive to develop quality as part of their reimbursement or pay is based on their own record data which should mirror compliance with certain nationally set guidelines.

Researchers can access most registries hosted by the ISD and other organizations, but sometimes need permission from different Health Boards and the Privacy Advisory Com- mittee, which can complicate the research process. However, projects are under way to try to facilitate access to both primary and secondary care data for researchers.

There is also a general understanding around the importance of having publically available data. The main data that are regularly published in the media and known to the public are standardized mortality ratios (SMRs) and data on waiting times. The inclusion of patients in registers is described as in general accepted by the public, but it is not established whether this refers to limited awareness among patients or whether it is an active choice.

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Sammanfattning

Skottlands regering och NHS Scotland (National Health Service for Scotland) ansvarar för hälso- och sjukvårdssystemet i Skottland. Regeringen utarbetar budget, policies och strate- gier, medan NHS ansvarar för utförandet och svarar inför skotska parlamentet. Många funktioner delegeras av regeringen ner till de 14 hälsoråd (NHS Boards, liknande Sveriges landsting) som i sin tur bär ett ansvar för att leverera vård på alla nivåer till det geografiska område som rådet ansvarar för.

Skottlands kvalitetsstrategi för hälso- och sjukvården klubbades igenom 2010 och är det centrala dokumentet för policyutveckling och kvalitetsarbete inom NHS. Strategin upp- muntrar kvalitetssäkring och kvalitetsförbättring av hela sjukvårdssystemet genom samar- beten på olika nivåer: mellan personalgrupper inom vården, mellan patienter och vårdper- sonal, samt mellan andra organisationer som är verksamma inom vårdsektorn. Tre centrala spår genomsyrar strategin:

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Personfokus – individuella behov ska respekteras och arbetet ska genomsyras av medkänsla, kontinuitet, tydlig kommunikation och ett transparent system för be- slutsfattande.

•

Säkert – vårdmiljön ska inte innebära några extra risker utöver det som normalt kan förväntas, för vare sig patienter, anhöriga eller personal.

•

Effektivt – de mest lämpliga och effektiva behandlingarna ska erbjudas, liksom den bästa tänkbara servicen, och onödiga eller skadliga avvikelser ska systematiskt arbetas bort.

Inom NHS är ansvaret för kvalitetsarbetet uppdelat på Information Services Division (ISD), Healthcare Improvement Scotland (HIS) och Scottish Intercollegiate Guidelines Network (SIGN), där särskilt de två förstnämnda har fått en mer centraliserande roll på senare år och numera arbetar tätt tillsammans kring mätningar, datainsamling, analys och implementering. Datainsamling i syfte att förbättra kvaliteten inom vården görs på alla nivåer inom det skotska hälso- och sjukvårdssystemet. Även om register och mätningar tidigare utfördes av andra aktörer, har ISD inom NHS mer och mer tagit över ansvaret för upprättande och underhåll av register samt genomförande av revisioner. Den nationella strategin bygger mer på att länka samma redan befintliga register och databaser än att upp- rätta helt nya register. Det är viktigt att inte blanda ihop nationellt kvalitetsarbete, som bygger på datainsamlingar, och diagnos-specifika kvalitetsregister, vilka endast utgör ett fåtal i Skottland.

Det finns fyra övergripande system för kvalitetsmätningar: revisioner av de 14 hälsoråden för att säkerställa att deras verksamhet utförs i enlighet med uppdraget; revisioner på nationell nivå för att säkerställa kvalitet inom olika vårdsektorer och diagnoser; särskilda kvalitetsprogram, normalt koordinerade av HIS, som till exempel kan gälla förbättringar av en speciell aspekt av vården, och slutligen de tre diagnos-specifika registren (cancer, MS och njurregistret). Ur ett folkhälsoperspektiv kan sägas att registren generellt används för att identifiera mönster på nationell nivå, för att få underlag till att göra eventuella föränd- ringar i vården gällande kvalitet och tillgänglighet.

Deltagandet i mätningar och utförandet av desamma är generellt högt och högt accepterat inom det skotska hälso- och sjukvårdssystemet. Det finns inga belönings- eller straffmek-

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anismer för de aktörer som inte vill delta, men systemet har en peer-review-komponent inbyggd och att inte delta ger därför anledning till misstankar om att aktören ifråga har något att dölja. Deltagandet är därmed alltid fullständigt.

Vad gäller tillgänglighet hos insamlade data har forskare tillgång till de flesta register som sköts av ISD, men i vissa fall krävs ansökan om tillstånd hos ett eller flera av de 14 hälso- råden samt tillstånd från en etisk nämnd (the Privacy Advisory Committee) vilket kan komplicera forskningsprocessen. Det finns dock flera nystartade projekt som syftar till att tillgängliggöra data på ett enklare sätt, med forskare som främsta målgrupp men i viss mån även för kommersiella aktörer. Det sistnämnda spåret är dock omdebatterat och Skottland har en mer restriktiv hållning till kommersialisering av patientdata jämfört med England.

Initiativ har också tagits för att underlätta koppling av primärvårds- och sjukhusdata, som idag är två helt olika system.

Vikten av transparens i systemet framhävs vidare i Skottland och allmänhetens tillgång till data är god via ISD, som även kan utföra enklare analyser av populationsdata vid förfråg- ningar från forskare eller allmänhet. Data kring olika utfall publiceras regelbundet, medi- erna rapporterar dock mest frekvent om SMR (standardized mortality ratios) som är ett månatligt kvalitetsmått på sjukhusens resultat från den vård de erbjuder. Inklusionen av patientdata i register är generellt accepterad i befolkningen, men det är inte helt klarlagt huruvida detta beror på okunskap hos befolkningen eller ett aktivt eller passivt god- kännande.

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1 Introduction to the healthcare system

This chapter provides an overview of the Scottish healthcare system, including its histori- cal roots, overarching structure, main actors and funding.

1.1 Overarching structure

The Scottish Cabinet Secretary for Health, Wellbeing and Cities Strategy has the highest responsibility for health and health services, according to the overall policy of the Scottish Parliament. Supported by officials at the Scottish Government’s Health and Social Care Directorates, the ministers set healthcare policy, oversee the delivery of services by the National Health Service (NHS) and regulate a small independent sector. Many healthcare functions are delegated from the government to the 14 territorial NHS Boards (table 1), which are responsible for planning and delivering all health services to the population in their areas.

Figure 1. Structure of the Scottish healthcare system¹

1 Steel D, Cylus J. United Kingdom (Scotland): Health system review. Health Systems in Transition, 2012;

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Scottish Parliament

National health bodies (9) Local authorities

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CHPs (36) Operating

divisions (11) Independent sector

Hospitals, hospices, clinics Hospitals

GPs, dentists, pharmacists Community

services

Scottish Government Cabinet Secretary & Ministers Health & Social Care Directorates

Territorial NHS Board (14)

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Table 1. NHS Scotland territorial health boards²

Although there is no purchaser–provider split in Scotland and unified, integrated boards combine these roles, regional health boards focus on strategic leadership and performance management of the entire local NHS system. Their functions comprise:

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Strategy development – to develop a local health plan for its area, which addresses the health priorities and needs of its resident population, and within which all aspects of NHS activity, in relation to health improvement, acute services and primary care are specified

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Resource allocation – to address local priorities by deciding how the funds allocated to it are deployed locally to meet its strategic objectives

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Implementation of the local health plan and the local delivery plan

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Performance management of the local NHS system, including risk management.

Within each board, responsibility for delivery is delegated to operating divisions for acute services and to community health partnerships (CHPs) for community and primary care services. There is no purchaser-payer split; NHS boards directly employ staff working in hospitals and in the community. The boards also manage, through CHPs, the independent contractors working in primary care, such as GPs, dentists and community pharmacists, and reimburse them for the work they do for the NHS.

A number of mechanisms are used to hold the NHS Boards accountable to the Scottish Parliament for the health services they deliver. For example, reviews are made regularly by the Parliamentary Health Committee, Audit Scotland and Healthcare Improvement Scot- land within a broader National Performance Framework (see chapter 3).

2 Ibid.

Population (2010)

Budget (2010/11)

£ million Staff headcount

(2011)

NHS Ayrshire and Arran 366,900 589 10,289

NHS Borders 112,900 171 3,151

NHS Dumfries and Galloway 148,200 246 4,343

NHS Fife 364,900 519 8,571

NHS Forth Valley 293,400 406 5,867

NHS Grampian 550,600 704 13,932

NHS Greater Glasgow and Clyde 1,203,900 1,955 38,538

NHS Highland 310,800 497 8,546

NHS Lanarkshire 562,500 824 11,516

NHS Lothian 836,700 1,063 21,771

NHS Orkney 20,100 32 526

NHS Shetland 22,400 38 571

NHS Tayside 402,600 614 13,521

NHS Western Isles 26,200 60 1,023

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In addition to the 14 territorial health boards, the NHS also consists of nine national health bodies that deliver services that are best provided by a single organization, such as ambulance transport, information, education and quality improvement. A brief description of the roles and 2010/2011 budget for the national health boards is given in table 2.

Table 2. NHS Scotland national health bodies³

1.2 Major actors

The Scottish Government and NHS Scotland are the two main actors in the Scottish healthcare system. Budget, policies and strategic initiatives are set by the government, while the NHS is responsible for the delivery of care to the population in its region, and held accountable to the Scottish Parliament. Within the NHS, the Information Services Division (ISD), Healthcare Improvement Scotland (HIS) and the Scottish Intercollegiate Guidelines Network (SIGN) drive national quality improvement efforts. The ISD and HIS in particular have increased their roles in quality improvement in recent years and also collaborate closely on measurement, data collection, and analysis.

The Scottish Government 1.2.1

As mentioned earlier, the Cabinet Secretary for Health, Wellbeing and Cities Strategy has the overarching responsibility for healthcare in Scotland. The Scottish Government, sub- ject to approval by the Scottish Parliament, determines how the overall budget should be split between the NHS and other public services such as education and transport. The

3 Ibid.

Budget

£ million Description

Healthcare Improvement Scotland 17,5 Develops advice, guidance and standards; drives improvement; scrutinizes and reports on performance Mental Welfare Commission for

Scotland 3,7 Safeguards rights and welfare of people with learning disabilities, mental illness or other mental disorders

NHS 24 58,5 Online and telephone-based information and advice

services

NHS Education for Scotland 399,4 Designs, commissions and quality assures education, training and learning for NHS workforce

NHS Health Scotland 21,8 Develops and implements national programmes to improve population health

NHS National Services Scotland 262,9 Provides a range of services, such as supplies, blood transfusion, information and statistics and health protection

National Waiting Times Centre 49,2 Runs the Golden Jubilee Hospital, receiving referrals to reduce waiting times

Scottish Ambulance Service 216,4 Provides emergency ambulance and non-emergency patient transportation

State Hospital Board for Scotland 74,7 Provides high security and psychiatric care

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Cabinet Secretary and the Scottish Government’s Health and Social Care Directorates then decide how to deploy the funds allocated for health and social care, and monitor their use.

The Scottish Government Health and Social Care Directorates have responsibility for health and social care policy, management of the NHS, and oversight of social care services. The directorates are headed by a director-general who is also chief executive of NHS Scotland. In relation to health, the directorates are responsible for:

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Determining national objectives and policies for health protection, health improvement and health services

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Setting targets and offering guarantees on behalf of patients

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Providing a clear statutory and financial framework for the NHS

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Holding the NHS to account for its performance against national priorities and targets

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Intervening when serious problems or deficiencies in service arise that are not being resolved quickly enough at local level.

NHS Scotland 1.2.2

NHS Scotland is the national and publicly funded healthcare provider. It was created in 1948, at the same time as the NHS in England and Wales. The formation of NHS Scotland is based on the National Health Service (Scotland) Act of 1947, which was later repealed by the National Health Service (Scotland) Act of 1978. As mentioned earlier, NHS Scot- land is currently made up of 14 regional health boards and nine national health bodies. The main parts of the NHS that drive quality work across Scotland are described in more detail below.

Information Services Division (ISD)

ISD Scotland is part of the national health body NHS National Services Scotland. The ISD collects a wide range of health-related administrative data on behalf of the NHS and has been the source of Scottish national healthcare statistics for over 50 years. The data is used to enhance decisions about healthcare in Scotland to improve the health of the Scottish people. The ISD also publishes a wide range of data to inform the public about the quality of Scottish healthcare. Finally, the ISD supplies HIS with national clinical data for healthcare improvement analysis and projects. The ISD and HIS work particularly close together on mortality data collection and analysis.

Healthcare Improvement Scotland (HIS)

HIS was formed in 2011 and replaced its predecessor Quality Improvement Scotland. HIS is responsible for:

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Developing evidence-based advice, guidance and standards for effective clinical practice

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driving and supporting improvements in health care practice

•

providing assurance about the quality and safety of care through scrutiny and performance reporting.

HIS’s focus on improvement and implementation sets it apart from its predecessor Quality Improvement Scotland, which produced guidelines but did not engage in programs for

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healthcare improvement. This has also led to an increased emphasis on measurements and audits to follow up how guidelines are implemented.

Based on the standards it develops for care and treatment, HIS conducts reviews of performance in each board. Boards complete a self-assessment questionnaire that is then validated by a visit undertaken by staff from other boards with experience of the service under review and members of the public. HIS then produces and publishes a local report on each visit and a national overview at the conclusion of each cycle. HIS does not have power to ensure compliance with its standards or to enforce its recommendations, but its reports have considerable authority and feed into the health and social care directorates’ performance management process.

Scottish Intercollegiate Guidelines Network (SIGN)

The SIGN was formed in 1993 and has been part of HIS since 2005. The objective is to improve the quality of healthcare for patients in Scotland by reducing variation in practice and outcome through the development and dissemination of national clinical guidelines containing recommendations for effective practice based on current evidence.

1.3 Private – public

Since the creation of the Scottish Parliament in 1999, the healthcare policy of the Scottish Government has diverged from the rest of the UK and is today working to limit the role of private actors in the healthcare system. The Scottish Government is not supportive of further privatization in healthcare and has reduced the number of partnerships between the NHS and the private sector.⁴ There is nonetheless a small independent healthcare sector that includes both private and non-profit-making actors. As of today, the independent sector comprises:

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Seven acute medical and surgical hospitals (306 beds) offering inpatient, outpatient and day-care services ranging from routine investigations to complex surgery

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Ten mental health hospitals and clinics (342 beds and 50 day-case places), providing assessment, treatment and rehabilitation for children and young people with eating disorders, people with learning disabilities, people requiring intensive psychiatric care, and people with drug and alcohol problems

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15 voluntary hospices (286 beds and 160 day-case places) providing specialist palliative care on an inpatient, outpatient and day-care basis

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Two specialist clinics providing cosmetic and laser treatment.

With the exception of hospice care, the independent sector is funded mainly by private insurance or charges paid directly by patients. Hospices have charitable status and do not charge for their services; they receive a substantial part of their funding from the NHS. The NHS also contracts to a limited extent with the private sector for the provision of certain services to NHS patients. In 2010/11, NHS Scotland spent £65 million on services from the private sector, equivalent to only 0.6 percent of total NHS spending.⁵

4 Guardian, Nov 2^nd, 2011: “Scotland keeps its NHS public” http://www.guardian.co.uk/healthcare- network/2011/nov/02/scotland-england-nhs-snp-minimise-private-sector-role

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1.4 Insurance system and funding

Since its inception, the aim of the NHS has been to provide access to healthcare to residents, irrespective of their ability to pay. All residents of Scotland, as well as residents of other United Kingdom countries visiting Scotland, have access to Scottish healthcare. In addition to public healthcare, some people are covered by private insurance, either paid by their employer or by the individual, in order to obtain faster or other services than those provided by the NHS. According to a 2012 study by the European Observatory on Health Systems and Policies, 8.5 percent of Scots are covered by private medical insurance.⁶ The NHS is financed mainly through general taxation (76.2 percent) with a further 18.4 percent coming from the NHS element of National Insurance Contributions (NICs). The remainder comes from charges and receipts, including land sales and proceeds from income-generation schemes.

6 NICs are compulsory contributions paid by employers, employees and self-employed people on earned income only. 10 per cent of total NIC payments are allocated to the NHS.

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2 Initiatives for healthcare quality and follow-up

The changes in the healthcare system to increase the focus on quality can be described as having been ongoing for about a decade. Around 10 years ago, government policy and the media were mainly focused on access to healthcare in terms of waiting times and the year- long queues that existed for some procedures. Scotland has since then been looking at growth and investments in the healthcare sector, where substantial resources were invested in the waiting times area.⁷ The Quality Outcomes Framework was introduced in the whole of the United Kingdom as part of a revised contract for GPs that was intended to improve quality in general practice in 2004.

However, the reforms are also described as a result of a global trend where a quality movement swept the world in the mid-2000s, and this is also the time when the more person-centered strategies are said to have begun to be implemented, partly as an incentive to improve healthcare quality for patients and staff alike (where the debate is still on-going in the U.K.)⁸ and partly as a strategy to improve cost-efficiency within the healthcare system.⁹ 2.1 The Healthcare Quality Strategy for NHS Scotland

The Quality Strategy was enacted by the Scottish Government in 2010. It is sprung from the Better Health, Better Care Action Plan enacted in 2007¹⁰, which made a series of com- mitments to improve the health of everyone in Scotland and to improve the quality of healthcare and healthcare experience. The quality strategy is intended to take the quality dimension of Better Health, Better Care one step further to continue the pursuit of excel- lence in healthcare, and has been developed in close cooperation with people working in the NHS, patients and carers. The Quality Strategy is described as a key changer or catalyst in Scotland, and provides the overarching context for prioritization of policy development and improvement. At its core are three quality ambitions:

•

Person-centered – mutually beneficial partnerships between patients, their families and those delivering health services, which respect individual needs and values and which demonstrate compassion, continuity, clear communication and shared decision- making.

•

Safe – there will be no avoidable injury or harm to people from health care they re- ceive, and an appropriate, clean and safe environment will be provided for the delivery of health care services at all times.

•

Effective – the most appropriate treatments, interventions, support and services will be provided at the right time to everyone who will benefit, and wasteful or harmful variation will be eradicated.¹¹

14(9): 1–150.

8 Guardian, Feb 28, 2013: “More than a broken leg: when patients and NHS staff really count as people”

(retrieved online March 1, 2013) http://www.guardian.co.uk/healthcare-network/2013/feb/28/patients-nhs- staff-personalised-care

9 Guardian, Jan 17, 2013: “A bigger say in the NHS for patients - greater patient involvement in the health service could lead to better quality care and more efficiency savings” (retrieved online Feb 6, 2013) http://www.guardian.co.uk/healthcare-network/2013/jan/17/nhs-patients-bigger-say

10 Better Health, Batter Care: http://www.scotland.gov.uk/Resource/Doc/206458/0054871.pdf

11 Healthcare Quality Strategy NHS Scotland http://www.scotland.gov.uk/Resource/Doc/311667/0098354.pdf

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Implementation of the quality strategy is seen as the way by which longer-term transfor- mational challenges are addressed and, in the shorter term, greater efficiency and productivity are achieved. The strategy encourages whole system improvement through mutually beneficial partnerships between clinical teams, the people in their care, and other national organizations involved in healthcare delivery. To this end, it provides the context for all subsequent statements of Scottish government policy on different aspects of health care.

Centralization and standardization of quality measurements across the NHS is seen as piv- otal to achieving the goals of the quality strategy. To achieve this, a quality alliance in- volving all key stakeholders will be established, tasked with overseeing the implementation of the quality strategy and ensuring whole-system integration and alignment. Initial work is focused on ensuring that existing and new initiatives are appropriately aligned with the quality ambitions, and that their impact on the ambitions is measured and monitored accurately and consistently across the NHS. Examples of initial improvement interventions include:

•

Align the 2011/12 HEAT targets (grouped into 4 priority areas: Health improvement, Efficiency, Access and Treatment Appropriate to Individuals) through the Quality Strategy

•

Develop a Quality Measurement Framework (section 3.5.1) underpinning the Quality Ambitions with related high-level outcome indicators

•

Establish governance responsibilities and procedures to support quality, and minimize risks

•

Ensure that national and local audit programs support the development of appropriate indicators of quality

•

Develop the Quality Improvement Hub, a partnership between Healthcare Improve- ment Scotland (HIS), NHS Education for Scotland, the Information Services Division (ISD), NHS Health Scotland and the Quality and Efficiency Support Team at the Scottish Government¹²

2.2 Measuring subjective experiences of healthcare

The Healthcare Quality Strategy for NHS Scotland has a clear focus on patients’ subjective experiences of healthcare and measureable output. The focus on patient experience is only about two years old in terms of formalizing measures for systematic quality improvement within this area; developing and implementing standard measures for the whole spectrum of quality improvement in healthcare, and not just patient experiences, however, has been an on-going process for a longer period of time. The creation of 11 quality measure frameworks is one of the results of these processes. Six are already publically available and the ISD have developed a website which will be launched in early summer 2013.

The focus was previously on patient complaints and The Patient Safety Programme managed by the HIS is said to have brought about a real change in culture. The area has however now been extended to also comprise staff experiences, allowing them to learn from others and encouraging them to comment on the system.

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There has been a debate on “whistle blowers” as some staff has been described as “telling on” their employers when the routines and work environment have failed, but procedures have now been established for this. Comparisons can be made with the aviation industry where the work environment has always encouraged people to “complain” and suggest improvements as part of overall quality assurance work. There are multiple reasons behind this new attitude to “complaining” within healthcare, but the ones with most leverage are described as some critical clinical incidents and investigations following on these.

2.3 Public awareness of quality within the healthcare system Three things are described as central to public awareness: waiting times, hospital cleanli- ness, and safety work. The ISD publish hospital mortality rates (SMRs) monthly, but these are not followed up regularly by the media and no hospital comparison statistics have been made available to the public, except for the SMRs.

There may be an increasing incentive for linkage between primary and secondary care due to changes in the health system in England, where the role of GPs in commissioning care has increased¹³. The patient has a choice on where to go for healthcare, and the registries describing hospital outcomes become interesting in this context in terms of providing information to help decision-making, should results be regularly published and in demand.

However, interest in free choice is not described as very extensive in Scotland.

There has been some debate around the free choice option. People have objected to it because they think money spent on its administration could be used in a better way. Intro- ducing choice is in general seen as a privatization attempt, which a majority of Scottish voters do not support. There is more support for a national health service and the majority of Scots still proclaim a collective perspective on social services and not privatizing such services.¹⁴

There is also a strong awareness of socioeconomic differences in healthcare, both in utili- zation of healthcare services and in healthcare output, where the government keeps a focus on prevention, not least because of the demographic challenge, and where different initiatives have been introduced to even out inequalities (see paragraph 5.3). In addition, as for the importance of registries on a macro level, the study on cancer survival is described as having been very influential in bringing about healthcare changes in the whole of the U.K.

as well as in Scotland locally.

On a population level, the registries are mainly used to spot patterns and variations, hence leading to initiatives to implement changes to improve the system so that the NHS, hospitals and GPs can provide better care for the population at large. The aim as such is to make small improvements for a large number of people, rather than using specific methods mainly for preventing particular events with adverse outcomes.

In 2011, the Scottish government embarked upon an ambitious project to set up an online system to give healthcare professionals access to a key snapshot of patient information, using systems of clinical portals¹⁵. The project aims to remove the need for clinical staff to

13 Guardian, March 22, 2011: “Scottish health secretary: England will end NHS as we know it”

http://www.guardian.co.uk/healthcare-network/2011/mar/22/scottish-health-secretary-england-ending-nhs

14 Guardian, Nov 2^nd, 2011: “Scotland keeps its NHS public” http://www.guardian.co.uk/healthcare- network/2011/nov/02/scotland-england-nhs-snp-minimise-private-sector-role

15 Guardian, March 9, 2011: “Scotland to get patient 'snapshot' IT system - clinicians' portal to provide view of patient information” http://www.guardian.co.uk/healthcare-network/2011/mar/09/scotland-spend-4m-it- clinical-portal-snapshot-system

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log on to multiple IT systems to obtain all the information needed for treatment. The system is expected to cover more than a quarter of the Scottish population. The new system will be used by doctors, nurses and other healthcare professionals across primary care and acute care at a consortium of four Scottish health boards. The project is still ongoing.¹⁶

16 http://www.ehealth.scot.nhs.uk/?page_id=8

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3 Information systems and registries

Information for tracking and improving healthcare quality is collected across the entire Scottish healthcare system and spread out across several actors. The main players on a national level are Healthcare Improvement Scotland (HIS), formed in April 2011, and the Information Systems Division (ISD), both part of the NHS. A general note is to not confuse national quality measurements and quality registries. Quality registries are very few in Scotland (only three), while national measurements of quality are used frequently and systematically to improve healthcare, as detailed below.

Four overarching systems for measurement and information management are used to track and improve healthcare quality in Scotland today. First of all, the government carries out audits to evaluate the performance of the 14 NHS health boards. Second, national audits are performed to measure and improve the quality of healthcare for selected diseases or conditions. Third, specific quality improvement programmes, typically coordinated by the HIS, can be initiated to drive improvements around a specific topic. Finally, Scotland has three national disease registries. All four systems are detailed below.

3.1 Audits of NHS Boards

The Scottish government carries out biennial (annual until 2010) audits, also known as accountability reviews, with each NHS board to evaluate the performance and quality of the healthcare that it provides. During the review, government officials meet stakeholders such as staff and patient representatives and review performance against the board’s local delivery plan, and the HEAT targets and quality ambitions. Reviews are open to the public, who may also ask questions, and the results are also publically available. Audits cover a wide range of topics indicating the overall performance of the healthcare system, including financial targets, referral patterns and whether providers meet quality criteria. Data collected in the annual audits include measurements of clinical performance and efficiency, access to healthcare, and financial performance.

HEAT Targets 3.1.1

HEAT targets are measured nationally and reviewed with boards annually. The targets are part of the wider performance management framework and national outcomes of the Scot- tish government. Each NHS board’s local delivery plan contains an improvement trajec- tory and a risk management plan showing how it will achieve the targets. The Scottish government agrees the plan with boards and this then forms an annual “performance contract”, and NHS boards are held accountable to the Scottish Government and Parliament for achieving the HEAT targets. HEAT stands for:

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Health improvement for the people of Scotland – improving life expectancy and healthy life expectancy;

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Efficiency and governance improvements – continually improving the efficiency and effectiveness of the NHS;

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Access to services – recognizing patients’ need for quicker and easier use of NHS services;

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Treatment appropriate to individuals – ensuring that patients receive high-quality services that meet their needs.

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The targets are always quantified to enable easy data collection, monitoring and comparison. Data is collected locally and then aggregated by the NHS health boards and then on a national level. HEAT targets are reviewed each year and a new suite is published each November. Once a HEAT target has been achieved it becomes a HEAT standard and boards are expected to maintain it.

3.2 National audits

Second, national audits are performed to measure and improve the quality of healthcare for selected diseases or conditions. As such, they only cover a select set of diseases or conditions, rather than performance indicators for the entire healthcare system. Some diseases and conditions have been audited on a national level for many years. The ISD is responsible for data collection, storage and analysis for these national audits. Some of the most important national audits are the Scottish Audit of Surgical Mortality, the Scottish Trauma Audit, the Scottish Stroke Care Audit, and the Musculoskeletal Audit.

Hospital Standardised Mortality Ratios (HSMR) 3.2.1

In 2009, the Scottish Patient Safety Programme (SPSP) was established with the overall aim of reducing hospital mortality by 15 percent by 2012. This was then extended to a 20 percent reduction by December 2015. Since December 2009, the ISD has produced quarterly hospital standardized mortality ratios (HSMR) for all Scottish hospitals participating in the SPSP, to enable them to monitor their progress on reducing hospital mortality over time.

The HSMR is calculated by obtaining routinely collected deaths data and includes all patients who died within 30 days from hospital admission. As such, the HSMR includes deaths that occur both in and out of hospital. The crude mortality data is then adjusted to take account of some of the factors known to affect the underlying risk of death. It also includes additional information and commentary on patterns of mortality over the longer term and by key demographic factors.¹⁷

The Scottish Audit of Surgical Mortality (SASM) 3.2.2

The Scottish Audit of Surgical Mortality (SASM) has been in existence since 1994 and includes participation from all surgical specialties in Scotland with the exception of tho- racic, cardiac and obstetrics. The audit aims to identify all deaths under the care of a surgeon that occur in hospital with each case undergoing a peer review process. SASM is maintained by the ISD of NHS. The data is collected via an electronic web-based portal which was launched in 2011. Data is submitted by the relevant surgeon, anesthetist, inter- ventional radiologist or intensivist, after which it undergoes a peer review process carried out by clinicians within the audited specialties on behalf of their colleagues.

SASM’s goal is to determine if there are any aspects of care that could have been improved or whether the assessor/coordinator felt that the quality of care provided was sub- optimal. Today, over 2,000 consultants participate and approximately 4,500 deaths are reviewed every year.¹⁸

17 Hospital Standardized Mortality Ratios: http://www.isdscotland.org/Health-Topics/Quality- Improvement/Quarterly-HSMR/

18 Scottish Audit of Surgical Mortality: http://www.isdscotland.org/Health-Topics/Quality- Improvement/Scottish-Audit-of-Surgical-Mortality/

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The Scottish Trauma Audit Group (STAG) 3.2.3

The Scottish Trauma Audit Group (STAG) was set up in 1991 to audit the management of seriously injured patients in Scotland and collected trauma data across all of Scotland until 2002, when it was believed to have achieved its aim. In January 2011, however, STAG began auditing the management of trauma patients again.

The aim of STAG is to improve the management of seriously injured patients through measurement, comparison and feedback. Data are collected by local audit coordinators based at 20 hospitals throughout mainland Scotland.¹⁹

Scottish Intensive Care Society Audit Group (SICSAG) 3.2.4

The Scottish Intensive Care Society Audit Group (SICSAG) has maintained a national database of patients admitted to adult general Intensive Care Units (ICU) and High De- pendency Units (HDU) in Scotland since 1995. SICSAG produces detailed information on the management of critically ill or injured patients. In October 2006, SICSAG joined the ISD.

The goal of SICSAG is to improve the care of critical care patients by systematic, compre- hensive audits of their management and outcome. Some key objectives are to establish and maintain a high quality validated dataset, identify evidence-based standards, identify quality indicators/minimum standards and monitor compliance, and collaborate with other agencies to develop quality improvement initiatives.²⁰

The Scottish Stroke Care Audit (SSCA) 3.2.5

The Scottish Stroke Care Audit (SSCA) was established in 2002 and now includes all hospitals managing acute stroke in Scotland. The SSCA is a national audit to check the quality of stroke care delivered in Scottish hospitals and has since its inception helped to drive improvements in stroke care which have contributed to a reduction in mortality rates and improved outcomes for stroke patients.

The SSCA collects information on the number of people that have a new stroke, how long it took the patients to get to the hospital, whether they went to a stroke unit, whether they had a brain scan and when they began medical treatment, all to monitor and improve stroke care across Scotland. The audit is an integral support for the care provided by every Scot- tish NHS Board.²¹

Cancer Audits 3.2.6

Regional (for the north, south-east and west of Scotland) cancer audits for sub-types of cancer have been performed for some time²². The mechanisms for a national cancer audit have been investigated since 2008, when the government launched the Better Cancer Care plan aimed at improving diagnosis, care and ultimately survival of cancer patients across Scotland. Part of this plan is a commitment to develop cancer quality performance indicators (QPIs) that will measure how good a service is and help to identify areas for im-

19 The Scottish Trauma Audit Group: http://www.isdscotland.org/Health-Topics/Quality-Improvement/Scottish- Trauma-Audit-Group/

20 The Scottish Intensive Care Society Audit Group: http://www.isdscotland.org/Health-Topics/Quality- Improvement/Scottish-Intensive-Care-Society-Audit-Group/

21 The Scottish Stroke Care Audit: http://www.isdscotland.org/Health-Topics/Quality-Improvement/The- Scottish-Stroke-Care-Audit/

22 http://www.scan.scot.nhs.uk/HealthProfessionals/Audit/Pages/default.aspx

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provement in the future. To achieve this, the Scottish Cancer Taskforce established the National Cancer Quality Steering Group with responsibility for:

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Developing sets (approximately 10–15 indicators) of tumor-specific national QPIs

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Overseeing the implementation of the national governance framework that underpins the reporting of performance against these national QPIs

The QPIs have been developed collaboratively with the three regional cancer networks, ISD, and HIS. Work is also progressing to ensure that all tumor networks take part in the national audit; however, this work has proven to be more resource intensive than originally anticipated. When the cancer audit is up and running, which it is estimated to take place in early 2014, all NHS Boards will be required to report against QPIs as part of the manda- tory national cancer quality programme. The national cancer audit will be an improvement to today’s data sets that are local, fragmented and with variations in collection practices across the country. With the standardized QPIs, data will be collected uniformly and therefore comparable across Scotland. Ultimately, the goal of the quality program is to improve the monitoring of outcomes and thereby improve patient care.²³

Scottish Audit of Intracranial Vascular Malformations (SAIVM) 3.2.7

The Scottish Audit of Intracranial Vascular Malformations (SAIVM) is a national clinical audit that evaluates health services for patients who were first diagnosed with an intracranial vascular malformation (IVM) in the years 1999 to 2003 and 2006 to 2010. SAIVM assesses the quality of IVM care by comparing the care of diagnosed IVM patients to audit standards developed by the SIGN and the SAIVM Steering Committee. Data collection occurs through nationwide collaborative network between the four Scottish neuroscience centers, other relevant specialists throughout NHS Scotland, patients, and GPs.

SAIVM’s objectives are to continue to recruit and follow-up a cohort of adults who are newly-diagnosed with an IVM, to monitor current clinical practice, assess current practice with reference to the audit standards, and ultimately improve practice.²⁴

The Musculoskeletal Audit 3.2.8

The Musculoskeletal Audit began in April 2009 and will provide data to complement the work of various hospital time-to-treatment teams by identifying rate-limiting steps for orthopedic treatment. This will help orthopedic departments meet their December 2011 referral to treatment HEAT target of patients waiting no longer than 18 weeks from receipt of a referral (e.g. from a GP) until starting treatment. Data is collected by local audit coordinators at orthopedic clinics across Scotland.²⁵

3.3 Quality improvement programs

Third, specific quality improvement programs, typically coordinated by the HIS, can be initiated to drive improvements around a specific topic. One such program is the Scottish Patient Safety Programme (SPSP) which has been operating since 2008. Patient safety is also one of three key pillars of the Scottish Healthcare Quality Strategy. Other similar

23 The Cancer Audit: http://www.isdscotland.org/Health-Topics/Cancer/Cancer-Audit/

24 Scottish Audit of Intracranial Vascular Malformations: http://www.isdscotland.org/Health-Topics/Quality- Improvement/SAIVM/

25 The Musculoskeletal Audit: http://www.isdscotland.org/Health-Topics/Quality-Improvement/The- Musculoskeletal-Audit/

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projects include the Scottish Patient Experience Programme (Better Together) and the Ef- ficiency and Productivity Programme.

The Scottish Patient Safety Programme (SPSP) 3.3.1

The Scottish Patient Safety Programme (SPSP) was launched in January 2008 as a five- year program. Its primary aim is to reduce mortality and adverse events in Scotland’s acute hospitals. This will be achieved by using evidence-based tools and techniques to improve the reliability and safety of everyday healthcare systems and processes. The Programme is coordinated by the HIS on behalf of the Scottish government. The objective of the ground- breaking Scottish Patient Safety Programme is to steadily improve the safety of hospital care country-wide.

A key element of the program is that staff caring directly for patients lead the changes and are able to monitor their improvement through the collection of real-time data at individual unit level. The SPSP has been successful in reducing mortality – up until December 2011 mortality was reduced by 9.5 percent across Scotland compared to 2008. Because of the success of the program it has been extended to pediatric services and primary care.

In June 2012, the Scottish government announced phase two of the SPSP, which has a new aim of reducing Hospital Standardised Mortality Ratios from 15 percent to 20 percent and to provide 95 percent harm-free care by the end of 2015. This second phase began in January 2013 and is focused on reducing infections, sepsis/VTE, and preventing falls and pressure ulcers.²⁶

Better Together 3.3.2

Better Together was developed in 2008/09 and is Scotland’s national patient experience programme, designed to support NHS boards, frontline staff and patients in improving healthcare service. The program has an analytical work stream that sits within the Scottish government and an implementation stream that sits within HIS since 2011.

The Better Together program focuses on three areas of work to improve patient experience: gathering feedback from people receiving hospital care, gathering feedback from people who receive primary care from GP services, and supporting patient experience activity across the country.²⁷

Detect Cancer Early 3.3.3

The Detect Cancer Early Programme was launched in February 2012 and is intended to improve survival for people with cancer in Scotland by diagnosing and treating the disease earlier. The overall aim of the initiative is to improve the five-year survival rate for people diagnosed with cancer.

To achieve its purpose, the program aims to increase the proportion of people with stage one disease at diagnosis, improve participation in national cancer screening programs, raise the public’s awareness of the national cancer screening programs and also the early signs and symptoms of cancer to encourage them to seek help earlier, and to strengthen data collection and performance reporting. Marketing campaigns are used to raise public

26 The Scottish Patient Safety Programme: http://www.scottishpatientsafetyprogramme.scot.nhs.uk/programme

27 Better Together:

http://www.healthcareimprovementscotland.org/our_work/patient_experience/better_together/the_better_toget her_programme.aspx

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awareness of the program and encourage people to participate in screening initiatives and see their doctor.²⁸

A HEAT target has been introduced to measure and monitor the performance of the program: increase the proportion of people diagnosed and treated in the first stage of breast, colorectal, and lung cancer by 25 percent by 2014/2015.

3.4 Registries

There are three central national disease registries managed by the ISD in Scotland: the Cancer Registry, the Renal Registry, and the MS Registry, with the national diabetes registry based in Dundee. The Scottish government has not been active in developing new specific disease registries. Rather than develop isolated registries, where feasible, the government is seeking to link all data into one large database.

The Cancer Registry 3.4.1

The Scottish Cancer Registry collects information on all new cases of primary malignant neoplasms, carcinoma in situ, neoplasms of uncertain behavior, and benign brain and spi- nal cord tumors arising in residents of Scotland. The registry has been collecting information on cancer since 1958. Approximately 45,000 registrations are made annually in Scotland and the cancer registration database currently holds over 1,400,000 records going back to 1958. It was originally set-up to study the long-term effects of X-ray but has over time evolved to its current use for monitoring disease development, to study the output of cancer care in different parts of the country and the efficiency of healthcare.

For patients diagnosed up to 31 December 1996, a limited data set was collected. For patients diagnosed from 1st January 1997 onwards, an extended data set, including information on stage and treatment, is collected for all patients. Data on ethnicity was also in- cluded but is often not available and therefore has always been poorly recorded with over 50 percent of cases recorded as 'unknown' ethnicity. Since June 2006, the registry is also able to derive geographical variables, such as council area and parliamentary constituency, which are required for analysis.

Cancer Registry data are used for a wide variety of purposes which include public health surveillance; health needs assessment, planning and commissioning cancer services; evalu- ation of the impact of interventions on incidence and survival; clinical audit and health services research; epidemiological studies; and providing information to support genetic counseling and health promotion.²⁹

The Renal Registry 3.4.2

The Scottish Renal Registry collects and analyses data on patients who have been diagnosed with renal failure and other renal disorders in Scotland. Data has been collected from Scottish renal units since 1960, which is the year when regular and routine renal replacement therapy for end-stage renal disease began in Scotland. All renal units in Scotland participate in the collection of data.

The registry has its roots in the routine collection of data performed by nephrologists in Scotland, and was run formally by the Scottish Renal Association until 1999 when the overall responsibility and funding for the registry was transferred to the ISD.

28 Detect Cancer Early: http://www.scotland.gov.uk/Topics/Health/Services/Cancer/Detect-Cancer-Early

29 The Scottish Cancer Registry: http://www.isdscotland.org/Health-Topics/Cancer/Scottish-Cancer-Registry/

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The registry contains data on the number of patients with established renal failure (ERF) and renal replacement therapy (RRT), their age, geographic location, treatment regimes, kidney transplantation, survival rates, and so forth.

The registry’s data is used to improve the quality of renal services provided through audit and peer review, plan for the provision of future renal services, undertake research including the production of basic demography and epidemiology statistics, and support the training of medical staff.³⁰

The MS Register 3.4.3

The Scottish MS Register has been collecting information on all new MS diagnoses since January 2010. It is a national register hosted by the ISD. It collects data on the number of new diagnoses, the demographic characteristics of patients, including age and geographic location, and the patient’s journey from first symptoms to diagnosis. Since the registry was initiated quite recently, it is still in the early stages of development and exploration.

Scotland’s comparatively high number of MS patients per capita, reportedly the highest in the world, is the background for developing the register. The collection of national data and formation of the register seeks to establish where MS patients are located, what clinical and other support is required, and whether services are meeting published national standards. As such, the register will be used to map the location of MS patients, develop a culture of improvement that will result in quantifiable improvements in neurological services for patients, and report on compliance with national clinical standards to improve their services at a local level. ³¹

The Scottish Diabetes Register and Survey 3.4.4

The national Scottish Diabetes Register (known initially as the Scottish Care Information- Diabetes Collaboration (SCI-DC) database and now known as SCI-Diabetes)³² was initiated in 2002 and is thought to be almost complete since 2005. It is based on daily down- loads of data from all hospital clinics and all except about five of 1,000 general practices in Scotland. The annual Scottish Diabetes Survey collates data submitted by all 14 NHS Boards from the register and provides data on the number of people with diabetes, the effects on their health, and the progress being made to improve the delivery and outcomes of care for diabetes. The goal is to use the data to compare prevalence, treatments, outcomes and performance between the 14 health boards. Unlike the national audits listed in section 3.2, the Diabetes Survey is not operated by the ISD, but by the Scottish Diabetes Group, a national steering group which coordinates the implementation of the Scottish Diabetes Framework that was published in 2002 and of which the survey is one part.³³

3.5 Other quality initiatives

The Quality Measurement Framework 3.5.1

The Quality Measurement Framework is a new initiative as of 2011/12 and has its origins in the national Quality Strategy. The Quality Measurement Framework provides a structure

30 The Scottish Renal Registry: http://www.isdscotland.org/Health-Topics/Quality-Improvement/Scottish- Renal-Registry/

31 The Scottish MS Register: http://www.msr.scot.nhs.uk/

32 http://www.sci-diabetes.scot.nhs.uk/

33 Diabetes in Scotland: http://www.diabetesinscotland.org.uk/Default.aspx

Measurements for Improved Quality in Healthcare